Flying by the Seat of My Pants

"For want of a nail…"

And now my life has changed in oh so many ways,My independence seems to vanish in the haze.But every now and then I feel so insecure,I know that I just need you like I’ve never done before.

Help me if you can, I’m feeling downAnd I do appreciate you being around.Help me get my feet back on the ground,Won’t you please, please help me?

John Lennon/Paul McCartney

There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.

Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mysteryailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.

When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.

Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.

Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.

So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotionalmusic so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?

Alas, my parents aren’t very comfortable with handling Nik without me or Niksdad on hand; Nik is fast and rascally and they are in their mid-70’s. Healthy and fit but not able to keep up with the demands of a kid like Nik. Not yet, anyway…

Oh, I feel for you! You have such a tough situation and you are incredibly strong. Most parents of children without any health problems or special needs would be crazy from the lack of sleep. I wish I had some answers… Sending hugs and also hoping you can get a reprieve!

I wish I had some answers. I would say that talking about it to as many people as possible might be an idea. If there is a local parents support group or if you are in a church or a club of some sort those might be places to talk. I know you don’t have a lot of time to go out and have a chat with people, so maybe you could even do this by proxy — i.e. ask a friend to ask around for anyone with ideas. I don’t know what kind of help you might get, but the thing is (just in a general way) that letting as many people as possible know that you are looking for help always increases the chance of your getting help. And to me it does sound like you need and deserve some help.

It also sounds to me like you are continuing to do a wonderful job. And part of doing a good job long term is resource management. And you are the most important resource in Nik’s life at the moment, so taking care of that resource is the opposite of a selfish move.

I think it was a good move to post about this. If you keep letting people know, the universe might conspire to help you out.

Thanks Lori!VAB – thanks, I really apprecaite the suggestions and the support. I am definitely going to start putting it out there through some local contacts, too. Hopefully, this won’t be too long-lived and Nik will be back to good health soon!

Oh, I know the feeling of needing to get away. And not just a rushed trip to Starbucks. I fantasize about getting away while somehow feeling sure that my kids are in great hands.

We have one grad student who can babysit for us, but I really want to extend this list. Could a nursing student be trained to sit for you? Now that he’s not in school, it’s gotta be hard for you to get out.

I’m sending you wishes for better health and more sleep. I know that end of the rope feeling, although your situation sounds tougher than mine.

Oh, this is really tough. I don’t know, either. I had the same idea as mom to jbg — if you have any grad programs around that might have students in nursing, speech, OT, special ed…anything even vaguely related! Maybe you couldn’t leave them with Nik (at least right now) but who might help you with entertaining him, letting you do household tasks on your own (at the very least) for a little time here or there, and who would be adult company for you while you’re at home so much. Perhaps someone who needs hours for a grad program – who knows?

But I agree – keep letting people know you need help. I’ve learned that people love to feel needed and will often respond in some way.

A good cry, in private. Taking it one day/moment/segment of time, at a time. Neither of those were permanent solutions for me, but they did make things a bit more manageable, and that’s all I was looking for.

Charlie had those kinds of completelyout of control tantrums, more so when he was around 6-8. This may seem like an odd thing to do and perhaps you are doing it: I made myself write it all down (every headbang—-call me crazy!) in a daily journal I wrote. I noted what the antecedent was. I also noted one good thing that had happened that day (sometimes I really had to think hard; sometimes it was “I have a beautiful boy”). I just tried to be good enough and say (very cliché) I am human too and I do need sleep—–I really just tried to focus on the moment.

I have been in your shoes and know how it can feel. But as a mum, we just keep going, dont know how, but we do. I too couldnt use repite or have someone in, and my family were no use.You are not a bad parent, you are fantastic and your human.And you all will get through this.

if I’ve reached my breaking point and I see no relief in sight, I would…

…mentally tick through my roster of friends/family until I can think of the one who would be the best fit to vent to (how much do you vent? How much do you keep inside?), and I’d spew. I’d warn ahead of time that I don’t need advice, I just need to have their nonjudgmental and sympathetic ear.

…blog.

…start putting the feelers out for (as many people before me have stated) a nursing student, or ask at the clinics I take my kiddo to that I am DESPERATE for some respite, and that my hours are flexible. You’re taking on herculean task here with very little help. You can’t do this forever. You need help.

…I would take a balls-to-the-wall hard look at my LIFE and see what can drop; what things I can lose for now. You are in crisis mode right now. Your job is to protect your family, and you are very much included in that definition of family. If you drop of sheer exhaustion & stress, who else is going to pop up in your place?

lots of wonderful blessings are emanating from us to you, and your putting this out in the universe may be just what you need. Just hold on. YOU CAN DO IT.

I thought I posted yesterday, but don’t see it…so I guess it is lost in cyberspace.WHAT can I do to help? I live fairly close, I am a SAHM mom so I have a flexible schedule. We don’t do a lot of outside activities, apart from a few doctor appointments I’m fairly open this month. Do you need errands run? Do you need someone to come clean? Do you need someone to come play with Nik so you can take a nice hot shower or grab a short nap?

Tears flow down my face as I read the last paragraph of your entry. How is it possible that I had/am having those exact thoughts? I love my girls desperately, but I just need a few moments where they are not requiring/demanding my every moment and ounce of energy. You are not alone. Hang in there. God bless,Kathy C.

Gosh, I am soooooo feeling the same way. TC has been up once or twice a night for awhile now. It is hard. I get up at 5 am to get ready for the day and have a little “me” time. I was listening to music on the way to work and crying and crying. GOD! I wish they could find out what is wrong with Nik. That must be so frustrating for you. Just know I am thinking of you and I understand, I really really do understand.

My prayers are with you. Not sleeping is so hard. Ask those you love for help if you can. I know in the night there are not many options for help. My husband and I used to switch four hours on and four hours off with our daughter. After years of bizarre sleep schedules I can say at age nine our daughter finally sleeps through the night and we finally have some answers after seeing so many doctors. We finally got some answers at the Children’s Cleveland Clinic in Ohio. Still, she is sick more days than not and we have no real reasons other than an extra chromosome. I stay awake worrying about her health. There is so much hope for your little boy but it is hard to see it when you are so tired and over worked yourself. If I had blogged when my daughter was a toddler and preschooler people would not believe where we are now and how far our duaghter has come. Be positive and try hard to find time to be alone and with friends. Easier said than done.

I know you know this, but it bears saying: you’re NOT a bad parent. Every parent gets frustrated and sad and tired and angry. And you really have a lot going on. I wish I could help you, but the best I can do is to say that by no means are you alone–in your feelings or in the world.